When Dipankar Shakya was two years old, he would continue playing for hours with the same vehicle toy and preferred spending his time in isolation. He didn’t seem to care if his parents were around or not, and if he was hungry he would sometimes produce a shrill cry but he hardly made any eye contacts. Efforts to get his response would go futile and his family didn’t have much clue about his unusual behavior. It was only later his parents found out that their son had autism. Dipankar is now nine years old.
“He would be busy playing the whole day with the same toy and everyone thought that he was very focused and easy to look after,” says Sijan Shakya, Dipanker’s mother who was perplexed by her son’s unusual behavior.[break]
“One instance made me realize that something was wrong. When we were out, I directed him to look at a cow on the street but he totally ignored me. Kids normally tend to look at movements, but he didn’t seem to care,” she says.
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World Autism Awareness Day being observed today
Autism Care Nepal
Biraj Shrestha involved in the sensory integration activity at Autism Care Nepal
Dipanker started walking late and showed signs of communication disorders, like not responding when called and avoiding eye contacts. When he was taken to a pediatrician, Sijan was informed that her child was the first case of autism that she had diagnosed.
“We had earlier taken him to pediatricians who had no clue about autism and I realized that there is very little awareness regarding autism in the country,” she adds.
Sijan then took a parent-child training of three months at Action for Autism in Delhi and she is currently working as a special educator at Autism Care Nepal, the only active autism organization in Nepal that works for autistic kids.
A research at the US Centers for Disease Control and Prevention has found out that one in 88 children in the United States has autism spectrum disorder. But according to Dr Arun Kunwar, child and adolescence psychiatrist at Metro Clinic, Thapathali, there has not been any research conducted about autism rate in Nepal. Dr Kunwar has been handling two to three cases of autism weekly which proves the existing and growing rate of autism in the country.
“Even three years back there wasn’t any facility to provide diagnosis for autistic kids but there seems to be some gradual positive changes,” he says.
Dr Kunwar explains that there are two ways to communicate through, verbal or non verbal means, but autistic kids have communication problems and may have delay in speech. Though they may be able to speak, they usually utter sounds which may not be produced in meaningful ways.
Normal people can comprehend what the other person in a group is saying through eye contacts but an autistic child won’t be able to do that.
“They may tend to repeat the same words. There isn’t a proper coordination with their eyes and what they see or hear. So they won’t have consistent eye contacts and won’t be able to reciprocate,” he adds.
With the number of autism cases on the rise, there is an urgent need to spread more awareness. According to Praveen Mishra, Secretary at the Ministry of Health & Population, the government will complete building the hospital, located at Manahara in Bhaktapur, for autistic children in the next fiscal year.
“We plan to run the hospital in the next five to six months and also advocate more public health programs on autism,” he says.
But parents with autistic children say that so far there has been no initiation from the government on providing facilities for such patients.
Kalpana Ghimire Baral’s daughter Sylvia Baral had normal growth but she started showing little signs of verbal communication and that, too, very late. Sylvia was admitted to a daycare school but since she was four years old, Kalpana started noticing a delay in her overall growth as compared to other kids.
Sylvia didn’t utter words and chose to stay aloof too. “She couldn’t take care of her normal day to day activities and couldn’t grasp things easily as compared to other kids,” says Kalpana.
The child psychiatrists and doctors that she was taken to couldn’t diagnose the symptoms and the real cause of her delay in growth. It was only later through self-inspection of her behavior and through a family friend who understood her symptoms that they found out that she had autism.
“This was some ten years back. Among all the doctors that we went to, only one psychiatrist had hinted that she could have been suffering from autism,” says Kalpana.
The main challenge, she says, was that her daughter wasn’t afraid of heights and she would have to be very careful regarding her safety.
With hardly any facilities provided for autistic children in the country, Kalpana’s husband Hem Sagar Baral opened Autism Care Nepal in 2008, a care center for kids with autism, to support autistic kids like their daughter Sylvia who is now thirteen years old. The center so far has trained more than 150 parents on how to take care of autistic children and has provided daycare services for more than 200 kids on various behavior trainings and treatment therapies through art and music.
Raj Kaji Prajapati, Program Coordinator at Autism Care Nepal who has been working closely with autistic kids, says that autism is typically thought of as a neuro-developmental disorder or condition which causes an impairment of the growth and development of the brain or central nervous system. Autism spectrum disorders are also known as pervasive development disorders (PDD), characterized by delays in the development of basic functions like socialization and communication.
“The real cause of autism hasn’t been identified though some research studies say that there might be some genetic link to it,” says Prajapati.
People with autism live with the condition their whole life, and such kids may have a special attachment to a particular work or habit. It basically causes impairment or disturbance in social skills, communicative skills and in their repetitive and restricted behaviors.
Every autistic kid has unique traits, and just because they have autism doesn’t mean they have low intellectual ability.
“Many people associate autism with mental retardation where intelligence is low as compared to their chronological age. But, though the socialization skills of autistic kids may be lower according to their age, their IQ can be higher,” he states.
He says that until a child is eight or nine months old, it will be hard to figure out anything, as many children have delay in growth. But signs of autism can be seen when the child is within eighteen months of age.
Prajapati informs that the organization also provides facility of Autism Diagnostic Observation Schedule (ADOS), which is an instrument for diagnosing and assessing autism, that is available only at Autism Care Nepal.
“Many parents may be irritated with the repeated behavior of their children but it’s important to maintain patience and is advisable to consult pediatricians, psychiatrists or neurologists as soon as possible because the faster you can treat autistic children, there are chances of progress in their condition,” he says.
Sijan Shakya, Dipanker’s mother and special educator for autistic kids at Autism Care Nepal, has been providing functional assessment classes for parents and children after evaluating the condition of their autistic children.
The program is called IEP (individual education plan) which is followed worldwide and may differ country-wise. The teaching process is based on focusing on an individual child, depending on what the child is capable of doing or not.
“The main intention is to differentiate the level of the kids and find out their fine motor skills, cognitive skills training and imitation skills. It also included training children on self-help, dressing up, their toilet habits and daily activities,” explains Sijan.
She explains that even while bringing up a normal child who doesn’t understand much in his early days, parents tend to communicate with the child. But many parents who have autistic kids don’t talk much to the child and show different behavior, thinking that they won’t respond.
“But it’s very important to be vocal with the child even if he’s grown up. For instance, you can say “khana” aloud when you’re serving food to the child, or when you’re going out, you can explain the place to him so that he can slowly understand what’s happening around. In case of blank communication, he’ll have no clue about what’s being said or done,” she says.
She also explains that children usually cry if they want something and understand that they will get things if they cry. “So whenever you give something to a child, you can pronounce the word or show him signs or pictures so that he knows what he wants.”
Pediatrician Merina Shrestha says that the symptoms of autism may range from mild to severe. Most parents are in denial about autism and unaware about the possibilities of improving the condition through structure teaching and behavior therapy.
“Parents should be careful about the activities of their children, how they speak, walk or behave, so that it’s easier to diagnose the condition. If they have any doubts, they shouldn’t wait but should seek immediate medical help,” suggests Shrestha.
Parents’ perspectives on raising autistic children
When Neelam Chand’s son didn’t start to speak early like the rest of the kids nor showed much signs of interaction, she didn’t have the slightest clue that her child was autistic.
“Many of our cousins and friends consoled us saying that some children usually tend to speak late and that it was nothing to worry about and gave example of other kids of the family who didn’t speak early. In that way we were kind of relieved,” says Neelam.
Till her son was one year old, she thought that everything was just fine. But when he didn’t utter words until he was three years old, she started to get more anxious. He didn’t respond much and hardly made any eye contacts as well.
After that, she took him to a therapist who also told her that some children speak a little late and since he had no hearing problem, everything seemed to be fine.
Dikshyant Gautam, 10, busy playing at Autism Care Nepal.
Neelam had never heard of autism before nor was she aware that her kid was autistic. After observing her son’s unusual behavior for a prolonged period of time and through some research on the Internet, she was confirmed that her child had autism.
Her son, Dikshyant Gautam, is now ten years old and attends the daycare program at Autism Care Nepal. “It was very difficult to interact with him earlier but through behavior therapies and practice, his condition has improved a lot,” she says.
Neelam was persistent to learn the right ways to deal with an autistic child. She learnt teaching methods and the ways to handle a child with autism and practiced the same at her home as well. She keeps a close watch on the daily activities of her son in order to keep track of his progress.
It was very helpful for Neelam when she started using signs and pictures to communicate with her son. The daily activities was thus monitored and communicated.
Neelam explains that when her son is hungry, he says “mam” and usually pronounces the first word of anything that he wants to express. A proper day schedule has been made at home and she has prepared cards with lunch, dinner, snacks and tea written which are used in order to interact with him.
“My son is non verbal and it’s amazing how he has learnt the body languages himself by observing his surroundings, and that has made it very easy for us,’ she says.
She explains that we have to be careful about how and in what ways we should speak to the child since autistic kids are not the same like other children. If they are kept happy, they can learn easily, and they shouldn’t be irritated because if their mood is off, they won’t learn much.
“It’s better if you can have an early diagnosis and can find out about autism because the sooner you can provide therapy and give behavior training, faster the child can improve. Don’t try to limit the child at home but let him explore the outside environment,” she suggests.
Sharing similar story to that of Neelam’s, Bidhan Shrestha says that his son wasn’t much active till he was one and a half years old. He also didn’t have eye contacts, like Dikshyant, but belonging to a traditional family, his elders had superstitious beliefs and took him to temples; but as expected, there was no chance of his son showing any progress.
Bidhan then took him to a speech therapist and ear specialist but no one actually knew the real cause.
He had once participated at a program where a child specialist had come from India. His son Biraj Shrestha was two years old then. “As soon as she saw my son’s activity, she told me that my son was autistic.”
“My son didn’t socialize and had repetitive behavior, and when I looked up the Internet, I saw many symptoms of autism to be similar to my son’s,” he says.
His wife also took mother and child training at Action for Autism organization in Delhi. He did everything, including expensive tests, but the behavior training which his wife learnt is what helped in improving the condition of his child.
“My son is now seven years old and he can dress up on his own, goes to bathroom on his own, does his basic activity himself and expresses when he wants something,” says Biraj.
Bidhan has been actively supporting the causes to improve the condition of autistic kids. “If more parents open up and support each other, we can help to develop awareness regarding autism,” he says.
Autism affects the way the brain processes information and prevents autistic persons from properly understanding what they see, hear or otherwise sense, leading to challenging behavior sometimes.
Signs and symptoms of autism
The symptoms may range from mild learning and social disability to severe impairment. But early diagnosis and appropriate training can show significant progress.
Like Neelam and Bidhan, if parents are conscious, aware and keep patience in monitoring the daily activities of autistic children, we can begin to see a lot of positive changes.
Aloof in manner
Inappropriate attachment to objects and may keep playing with the same toy for an unexpectedly a long period of time
Doesn’t respond when called and sometimes appears to be deaf
Inappropriate laughing and giggling
Avoids eye contact
Difficulty in interacting and playing with other children
No understanding of fear and real dangers
Lack of pretend play or unusual and repetitive pretend play
Likes sameness in everyday routine and doesn’t enjoy change
Echoes words and phrases
Enjoys spinning and rotating objects for a long period of time
Apparent insensitivity to pain
Unusual behavior or body movement such as flapping of hands or rocking and jumping
Crying tantrums, extreme distress for no apparent reason
No response to normal teaching methods
Extreme restlessness, hyperactivity or extreme passivity
Sometimes doesn’t like to be hugged or touched.
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